Thanks, Mom

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There she is. Mom.

This picture was taken back in 1996, during one of my visits to her and Dad’s home in Sarasota, Florida. I have another picture of her from two years later that means a lot more to me. But I’m reluctant to share it because it contains our entire wedding party, and I try not to post pictures of people without their permission.

Anyhow, the story I want to tell has to do with my wedding to Katie in 1998 and the role Mom played in making it special—as well as the role she continues to play, even though she has long passed on.

A Special Wedding Gift.

Two months prior to our wedding, Mom was pretty sick. The leukemia she had lived with for years was beginning its final march on her system. We weren’t sure she would make it to the wedding. We even began looking into moving the wedding to Sarasota so she could be with us. Continue reading

How Hard Can It Be? Just Cut It.

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It’s a small thing; I’ve planted seeds that are bigger than this pill. It’s so small that sometimes it can slip through my fingers as I’m getting it out of the bottle. Imagine trying to find this little thing on the floor—before your eager, ever-hungry dog does. Or one of your five curious, playful cats.

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The doctor wants my boy to have only one-half of a tablet every morning. See that line in the middle of the pill? That’s there so that you can split it in half with your fingers. Only it’s so tiny that you can’t get the leverage you need to break it—see the picture above. So into the pill cutter it goes. But not like that. It has to be straight, parallel to the edge of the box so that the cutter on the top can make a clean, even slice. Let me just get my finger in there to straighten it out.

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No, no, not that way. It has to be horizontal, not vertical. Vertical is too thin. Here, let me try it this way . . . almost got it . . . no, not like that . . . hang on, I think that’s right . . . oops . . . so close . . . let me try again . . . uh . . . Dammit!

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Okay. There it is. I have no idea how it got there. But at least it’s ready now.

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Mission accomplished.

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Twenty-nine pills and a half-hour later. I know it’s only breakfast time, but I need a drink.

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The Ballad of the Bedeviling Bedroom

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See that picture up there? That’s my boy (fourth child, third son, 11 years old), trying to go to sleep in his new bed in his new bedroom. We moved just about everyone around this past weekend. Usually, I would balk at such a thought—ASD kids have a hard time with transitions. But this was a pretty important move for a couple of reasons that I can’t get into right now.

Anyway, this poor boy was having a hard time with the change. He was excited to be moving to his older brother’s (third child, second son, 13 years old) room. The two of them had been roommates a few years back, and they had a blast together. But once he got into the room, he couldn’t cope. Within five minutes of Katie and me praying over him and giving him a good night kiss, he was back in our room, eyebrows knit, hands wringing, voice aquiver. Continue reading

Failure Is Not an Option

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A couple of days ago, I posted a picture of my oldest daughter and described her struggles with anxiety and school. I talked about how proud I was of her for fighting—even when she is fighting me. Although it looked like she was being obstinate and resistant, I could tell she was getting the message that she can’t give in.

Well, now it’s my oldest son’s turn. Continue reading

The Struggle Is Real

 

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Remember my story about my girl having a couple of seizures last summer? Remember my story about how hard it was for her to go to Mass during the summer? Well, the saga continues to unfold. Continue reading

Stubborn Faith in a Heavenly Vision

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A chilly morning in Emmitsburg, Maryland

Here they are: our six kids. All sitting quietly at the grotto on the campus of Mount St. Mary’s University, in Emmitsburg, Maryland. “The Grotto” (a replica of the Lourdes grotto in France) has been a place of quiet, prayer, and reflection for students and pilgrims for decades. Many were the afternoons and evenings I spent here during my college years, and I feel blessed to be able to bring my kids up here every now and then.

It’s a lovely sight, isn’t it? Anyone passing by would look at them and think nothing but warm and comforting thoughts. “What a wonderful family! They must be the most prayerful, holy, and well-behaved kids. Their parents must be awesome saints!”

Ha!

Now, I don’t want to give the wrong impression. Of course my kids are wonderful. They’re loving and kind and generous and good-natured. I’m crazy-proud of all of them. But angels? Don’t fall for it. They’re everyday kids with all of the challenges and temptations that their peers experience. They all have a checkered history of both fighting these temptations and giving in to them–sometimes very eagerly. They’re kids; what do you expect?

But they’re not just everyday kids facing everyday temptations. They’re also autistic. Every one of them. And that adds layers of complexity. This past Sunday morning was a prime example of these layers—and the reason why we ended up here.

A Familiar Drill.

Two of our kids had a tough Sunday morning. It began early for them. And by early, I mean six-o’clock early. I don’t want to go into the details, but suffice it to say that when one kid’s specific autistic traits trigger another kid’s specific autistic traits, it never ends well. And it rarely remains contained between the two kids. The disturbance spills over to at least one more, and that’s when the fun really begins.

So by the time we should have been leaving for Mass, four out of the six kids had been triggered in one way or another (another one would have been triggered too, but he just hadn’t gotten out of bed yet). With the melt downs and resulting emotional chaos, it became clear that Mass wouldn’t work. They were too keyed up, their emotions too raw. So we activated Plan B. We loaded everyone into the van, and headed for the Grotto. It wasn’t hard, either. By this time, they know the drill. They know that a quiet time in the mountains is much easier than sitting in a crowded church wondering if Dad was going to spring a pop quiz on them based on the Scripture readings for the day.

Once we got to the Grotto we did a few things. First, there was quiet time in the Grotto itself. Then, walking the path out toward the main entrance, we prayed a bit of the Rosary—but just three Hail Marys each instead of the traditional ten. Then, just off the main entrance, we stepped into the Chapel on the Hill, where we read the first reading from Mass, and I said a few words about it. That was it: forty-five minutes of God stuff. And not once did I have to deal with any major objections, melt downs or triggers. They were good as gold. Just as I had suspected.

Visions of Heaven.

I think it was significant that the passage we read (Isaiah 11:1-10) spoke about God’s desire to restore creation to its original harmony. The reading is filled with images like the wolf and the lamb living together in peace and a baby playing by a cobra’s den. It talks about there being “no harm or ruin” and about the earth being filled “with the knowledge of the Lord.”

We normally read this passage as a depiction of heaven. But during Advent, the Church plucks this vision out of the distant future and tells us that Christmas is a partial fulfillment of the promises. It tells us that we don’t have to wait until we die to find the kingdom of God. Right here, right now, we can take one or two steps closer to the kind of peace Isaiah talks about.

This is what I told the kids in the chapel. I told them that I’m not giving up on this vision, and neither should they. God has promised, and I’m going to hold him to his word. I will keep teaching and supporting and encouraging them to become the best version of themselves possible. Even if the forces arrayed against us are large and intimidating, I am still going to lean on God and his faithfulness. I am still going to do everything I can and trust that God’s plan for my family mirrors the plan described in this passage.

Stubborn Faith.

This may sound unrealistic or heroic, but what other choice do I have? Ours is far from a typical family. We have so many challenges distributed across so many different personalities that we would never survive without faith in a generous, loving God.

I don’t mean a generic faith. I don’t mean a naïve faith that is really an abdication of responsibility. I mean the kind of faith that lets you yell and cuss at God when things get out of hand. I mean the kind of faith that believes in God’s direct intervention in our lives—according to his inscrutable wisdom and on his unpredictable schedule. I mean stubborn, grit-your-teeth-and-believe-despite-all-evidence-to-the-contrary faith.

I’ve said it many times before, and I’ll say it many times in the future: I am convinced that this whole messy, beautiful, frustrating, agonizing, energizing, liberating thing is God’s doing. And so every time the challenges get too hard, or the weight feels unbearable, I know I have recourse. I can tell God, “This is the family you have given me, so I’m counting on you to give us what we need to make it through. You didn’t send your Son into the world just to tell us to pray more and try harder. So here I am. I’m waiting. Take your time if you want, but I’m not going to let you off the hook.”

I don’t know. Maybe I’m being too cheeky. Too arrogant. But this kind of prayer has gotten me through some very rough patches in the past. What’s more, it’s the kind of attitude I want my kids to have: trusting in God, but also expectant; humble before their Maker, but with the familiarity of a child to his father; accepting who they are, but never settling for a “lesser” life because of it.

In other words, I want to teach them the same kind of stubborn faith I’m learning.

I think it’s working.

Special Needs, Special Skills

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You know, when I tell people about our family’s unique make-up, I often get variations on one familiar response. It’s usually a combination of incredulity and well-intentioned pity. “Six kids? And they’re all on the autism spectrum? Wow, that must be so hard!”

Sure it’s hard. And challenging. Even daunting at times. But not to worry. We’ve got this. Why? Because special-needs parents have a very particular set of skills. They are skills we have developed over time as we have learned how to assimilate to our new normal, articulate the facts about our kids’ diagnoses, and advocate for them far and wide.

What are these skills? They are too many to count, actually. But the list below contains some of the more important ones. Take a look at them, and then ask yourself whether incredulity and pity are the best responses.

  1. Legal expertise. We know how to read a Federal law—and how to spot our family in it. It takes a special kind of person to know the ins and outs of Public Law 108-446, 118 Stat. 2647. It’s the kind of person who can point to this law with the kind of pride that many graduates point to their yearbooks. “See that? That’s us they’re talking about.”
  2. Close, personal relationships with members of the medical community. And the counseling community. And the law enforcement community. And all the local pharmacists.
  3. Elite status in our kids’ schools. Lunchroom moms and classroom volunteers? Rank amateurs. We have the principal on speed dial. Hell, some of us are on a first-name basis with school board members.
  4. No-Mess vision. It’s like x-ray vision, only way cooler. Cluttered countertops and overloaded kitchen sinks disappear before our very eyes. Piles of unwashed laundry melt away. Furniture damaged in melt downs or picked to shreds by anxious, OCD fingers blend into the walls and (beat-up) carpet.
  5. Membership in exclusive online communities. Other people call them support groups, but what do they know? We call them by their true names: Tribe. Extended Family. Confidantes. Council Elders. Best Friends.
  6. Premier access to upper-level insurance representatives. We know how to jump over the call-center drones half a world away and get right to the decision makers. We know the secret words that will get us there. We have their access codes in the form of multi-digit extension numbers.
  7. An unwavering commitment to date day. It’s more than just keeping the “romantic spark” in our marriage. It’s a matter flat out survival. But never at night. That’s the witching hour. It’s Saturday lunches for us. Or Sunday afternoon excursions to the grocery store together. It’s also the occasional getaway courtesy of a generous family member. Whatever it takes to keep us sane.
  8. Super intelligence. Words like methylphenidate, comorbidity, and neurodiversity roll off our tongues. We can spot the difference between OCD, ODD, and ADD at a hundred yards. We know what FAPE is and how to get it—and no, it’s not a contagious disease. We know how to take control of IEP meetings and how to explain complex neurological disorders to curious laymen and benighted teachers alike.
  9. Unbreakable strides. We don’t let little things like setbacks, discrimination, added diagnoses, or institutional ignorance slow us down. We know how to keep moving forward despite whatever obstacles or opposition we might face. We started our march with the first diagnosis, and nothing is going to stop us from doing everything we can for our kids.
  10. Wide open eyes. Where others might see stubbornness, we see a kid struggling with sensory overload. Where others see defiance, we see a perseverative loop. We have learned to perceive love in the quirky, the ordinary, and the bizarre. We can see joy in chaos and sadness in violence.
  11. Thick, thick skin. I’m talking rhino-hide thick. Judgmental stares bounce off us. Hurtful words shatter on impact. We laugh at denials of service, and scoff at the word No. How did our skin get so tough, you ask? From the salt of all the tears we shed early in our journey.
  12. Soft, soft hearts. We melt when we see a fellow traveler at the park or in the store—a young man flapping his hands or a small girl tapping on every window she passes. When we spot parents out with their special-needs kids, we smile broadly and have to resist the urge to run over and give them bear hugs. Our eyes mist up when our ten-year-old learns how to ride a bike or our first-grader gives us a hug. We have learned to receive love in unorthodox ways and unexpected circumstances. And we have learned how to give love in ways we never thought were possible. We excuse the inexcusable, embrace the inexplicable, and cherish the (seemingly) trivial.

So there they are: twelve key skills of a special-needs parent. As you can tell, we don’t want pity. We’re doing quite well without it, thank you very much.

However, if you wanted to give us cash, we wouldn’t object.